Scraps of information that might make a world of difference in your life

Sunday, 5 June 2011

Late Diagnosis of Mild Spastic Diplegia/Cerebral Palsy; Toe-Walking in Teenagers

It required a team of 3 highly experienced specialists to diagnose our son as having Spastic Diplegia, mostly because his particular Spastic Diplegia is so mild that he did not exhibit any symptoms of it until he was eleven or twelve years old already.

Even then, the only thing we were able to notice as parents was that he appeared to increasingly prefer walking on his tippy toes rather than on the whole of his foot.For two years or more, we very occasionally nagged at him to ‘walk properly!’Eventually, whilst buying a pair of shoes just after his fifteenth birthday, we realised what had originally manifested as a mere preference had become a necessity – he wasn’t able to flex his left ankle in such a way that he could put his heel to the ground.

Interestingly, for all that nearly all of the various doctors we consulted did mention Spastic diplegia as the single most common cause of toe-walking, none of them considered it to be a reliably obvious cause for our son’s toe-walking.That diagnosis was eventually arrived at after our son had been subjected to a series of vastly expensive and sometimes uncomfortable screening procedures to exclude a number of other possibly causes, the long term prognoses for which might be very different.

Parents with no family history of any hereditary disease whose teenagers are currently undergoing testing for any of the following conditions might be reassured to know their child could eventually be diagnosed with Spastic diplegia.

To shorten any diagnostic process, be certain to not only answer doctor’s questions as truthfully as possible but be willing to provide answers even to those questions he or she hasn’t thought to ask.(Our son’s Spastic diplegia was eventually attributed to an incident that took place when he was around 7- days-old which had given rise to so many other concerns that nobody stopped to even consider the possibility of any brain damage having perhaps been incurred.)

Spastic diplegia is a condition that is acquired in early childhood, most commonly but not always during gestation or birth.In the event its symptoms manifest during infancy, the term will most commonly only be applied to describe the location of its most obvious symptoms – diplegia referring to the lower limbs, quadriplegia referring to all four limbs, monoplegia referring to a single limb, etc.When a diagnosis can be made during infancy the name given to the underlying cause of those symptoms will be Cerebral Palsy.

Where no diagnosis has been made during infancy, doctors will more than likely use the term Spastic diplegia as a diagnostic term under which they may or may not choose to apply the various other suffixes that are applied to describe Cerebral Palsy.(Given that son’s symptoms manifested themselves physically, primarily in his lower limbs but more on one side than the other, the only term we haven’t ever heard being applied in his case is quadriplegic.)

3 comments:

Who did you find to diagnose. Ped. Neuro says no for my daughter, but myself, her physical therapist and a pediatrician friend of ours all say yes it is...... mild. However toe walking has been an issue her entire life to the point she is in casts and leg braces for most of this coming year. Also hugely traumatic birth etc. No other APPARENT symptoms. Not sure who to go to next? She really wants answers. She is 15.

As long as your Ped. Neuro says no to Spastic diplegia, what does he or she attribute your daughter's symptoms to, I wonder?

Truth be told, our son's symptoms were such that the instruction given to the Neuro we were referred to was to find out what sort of Charcot-Marie-Tooth disease he was afflicted with. That involved testing for evidence of something called demylination, the stripping off of an essential layer of the peripheral nerves. The Neuro could find no evidence of that, however, nor was an MRT able to show any problem in or around our son's spine. The diagnosis of Spastic diplegia was arrived at via a process of elimination then - i.e. our son didn't have any of the more obvious diseases that would have caused his symptoms therefore it must be Spastic diplegia.

A couple of other things I should probably mention are that a)the tests our son underwent were seriously expensive and b) recommended because the trauma he had suffered post birth wasn't supposed to have done any lasting damage. Having eliminated all other possible causes, the doctors reached the conclusion lasting damage had been done when he was an infant but hadn't showed up until he hit his teens and started growing like a weed.

Of course your daughter wants answers. She has her whole life ahead of her and wants to get an idea of what to expect.

If the current Neuro can't tell you why she's been stuck in casts/braces for the past year, you need to find a new one, I think.